Monday, March 31, 2008

Wow, what a day! As of yesterday afternoon, Anya has been feeling the full effects of the steroids. She was up several times throughout the night crying and frustrated. Today she has been needy, demanding, fussy, hungry, tired, and grouchy. Poor thing.

Add that to the fact that Esther, Isaiah, and I are sick and you've got a recipe for a hectic day!

We were hoping that Maintenance would be easy but it looks like we've got another trying year and a half ahead of us. But we are thankful for a good church family in Kansas City and know that God will give us the grace to make it through.

One of the highlights of the trip to Orlando was when the girls met the Disney Princesses in Magic Kingdom. Anya was speechless and all smiles...it was priceless.

She was disappointed that she wasn't able to wear her Cinderella dress for the occassion but it was a cold, hectic day and it simply didn't work out. But she still thoroughly enjoyed the event...especially the kiss from Aurora.

Sunday, March 30, 2008

The kids are asleep and Israel is busy watching an "Andy Griffith" episode so I thought I'd take the chance to write a bit about our trip to Orlando.

We left first thing Thursday morning in style - in a white stretch limo. The girls were dressed in blue Cinderella skirts and tiaras and carried scepters. They looked like true princesses!

After about eight hours of traveling we finally arrived at "Give Kids The World Village" resort, a marvelous place exclusively for children with life threatening diseases and their families. There we were greeted with smiles and gifts - and our dream week began.

Our villa was a spacious two bedroom, two bath place with a jacuzzi tub. The resort offered free unlimited ice cream, mini-golf, train rides, carousel rides, special events, and meals. There the girls attended a Pirate & Princess Party where they were pampered and officially crowned princesses in a special ceremony. On another evening they participated in a life size Candyland Game. They also got to meet Mickey & Minnie Mouse and Sponge Bob!

Although we could have spent our entire week at GKTW, they also provided us with tickets to all the most popular Orlando theme parks and a number of lesser known attractions. We didn't even have time to use them all! In just five days we visited Magic Kingdom, Animal Kingdom, Gatorland, Island of Adventure, and Sea World. The girls met the Disney Princesses, fed dolphins, watched the Nemo musical, played in Suess Landing, and touched a baby crocodile. They played in Pooh's Playful Spot, interacted with European deer, and met the Suess characters. We couldn't have imagined a more splendid week of family fun and adventure!

But the most beautiful thing is that we were on vacation as a family, enjoying one another and relaxing after nine long, hard months of hospital visits and medications. Even Anya said that her favorite thing about our trip was, "Being together".

It was also very special to be around other families who are facing situations similar to ours - where children being bald, riding in a wheelchair, or having scars was the norm. It was wonderful to be able to share stories and hurts with other families, and even to cry with another mother or two. And I was reminded that we are not alone, that we are not abnormal, and that we are blessed.

It is simply impossible for me to describe our week in a blog. But like Israel wrote in an email to his mom, "In short we had a marvelous time, with all of our expectations being exceeded. It really was like being in a dream the whole time, like taking a break from reality for a week."

Our trip ended in style with a limo ride home from the airport and a friendly reception by my parents. And now we're back to real life, and thankful for the precious life we've been given.

Thank you to Make-A-Wish (www.wish.org), Give Kids the World Village Resort (www.gktw.org), Anya's medical team, and the numerous donors and volunteers who made our trip possible. And thank you to BabyHawk (www.babyhawk.com) for donating a baby carrier for me to use with Isaiah on the trip!

Wednesday, March 12, 2008

It's been a whirlwind 48 hours but things have fallen into place - we're going to DisneyWorld on March 20-26th! Needless to say we are extremely excited!

To make a long story short Anya's doctors have determined that we should make the trip now because they do not anticipate that Anya's counts will have recovered enough to start treatment by next week anyway. This is ideal as it means that Anya will not be on any chemo while in Orlando and won't be suffering any after effects of steroids (two of our former concerns).

The Wish Granters from the Make-A-Wish Foundation just left our house after debriefing us on the coming trip. They also brought a few goodies including a princess crown & sceptor for Anya...and of course, we'll get a set for Esther too.

Here are a few highlights of our trip:

- A limo will pick us up and take us to the airport in Detroit.- We'll fly non-stop to Orlando and be taken via shuttle to Give Kids the World, an exclusive resort designed specifically for Make-A-Wish kids. We'll enjoy swimming pools, complimentary breakfast and dinner, and unlimited ice-cream.- Once there we'll receive passes to all of the Disney parks and SeaWorld and shuttle transportation to get us to each location.- We also received a generous check for spending money to cover our lunches, souvenirs, and any incidental costs that come up while we're there.- Upon our return to Detroit a limo will bring us back home again.

Our family is so excited to be going on this trip. After the Make-A-Wish people left we all danced around the living room for a while singing, "We're going to Disney World!"

We are so thankful to God for providing this for us and working out the details. We're also thankful to all of you for your prayers and of course to those who donate to Make-A-Wish in order to help families in need to make their dreams come true. We can't wait to go on the trip and share our memories and photos with you. Until then we've got a lot of work to do to get ready for a week away. Praise the Lord!

Monday, March 10, 2008

Anna took Anya to the clinic this morning (Monday) for blood counts. If they were high enough we were going to begin Maintenance tomorrow with a spinal tap. Unfortunately the ANC was too low to begin another round of chemo. We'll now wait and take counts again next Monday in hopes of starting Maintenance next Tuesday (March 18th).

This delay in treatment has also resulted in our trip to Orlando being delayed! The Make-A-Wish Foundation notified us yesterday that they had scheduled our trip to DisneyWorld to begin on March 20th!! But now that will be impossible, regardless of if Anya begins Maintenance next Tuesday or not because of the revised treatment schedule. We had really been looking forward to some fun in the sun as a break from this winter weather!

We're not sure what, if any, changes will need to be made to the timing of our return to Kansas City. Please continue to pray with us that Anya's treatment would resume speedily and that we'd have God's wisdom concerning the timing of our return home.

Thursday, March 6, 2008

The case manager for the clinic, otherwise known as "Pam", and one of Anya's favorites, gave us an overview of treatment during Maintenance. It will include:

a spinal tap with chemo every 3 months

a clinic visit for intravenous chemo and preventative antibiotic every month

steroids for five days of every month

oral chemo everyday

We had mistakenly been under the impression that Maintenance wouldn't include quite so much treatment. But we have again been reassured that this phase is not as intense as it was during Induction, Consolidation, or Delayed Intensification but rather similar to Interim Maintenance. They have said that Anya should be feeling more like herself during this next year and a half. We have also been told that most kids return to school during this time and that their hair begins to grow back. We are praying for a smooth transition to this new line of treatment.

(Previously we had been told that there was a good chance that Anya would be delayed in starting Maintenance next week because her counts have traditionally dropped and recovered late. However on Wednesday her counts were stable so we were told than that there is a good chance that she will start Maintenance on time next week after all. She is scheduled to have blood work on Monday and at that point we'll know something more definite.)

On Wednesday, Anya's visit to the clinic for chemo and a preventative antibiotic concluded the delayed intensification phase! Esther tagged along with us and got to see what happens when Anya goes to see the doctor. Unlike the usual quiet office, there were several other patients there for treatment so it was quite a zoo. But it was neat to talk with some of the other parents who are going through a situation similar to ours. It always helps put things in perspective.

While there, during lunchtime Anya started crying really loud because she was nauseous and embarrassed that she was going to throw up in front of everyone. Fortunately the nurse was able to give her medication after her IV finished that helped relieve her stomach discomfort.

The doctor said that Anya shouldn't be continuing to feel so sick to her stomach as a side effect from her last chemo drug and therefore the steroids must have caused some repairable damage to her acid levels. She has put Anya on a medication to decrease the amount of acid produced in her stomach and we are hoping that it will decrease the nausea and sensitivity to smell.

Tuesday, March 4, 2008

This has been a very uneventful week since Anya isn't scheduled for another chemo treatment until tomorrow. Anya has continued to be nauseous off and on and is more fussy than usual but overall she is feeling good.

Israel took advantage of this break and left last Wednesday night for another visit to Kansas City. I spoke with him last night and it sounds like he's had a great time visiting with the families of our church. He was planning to spend his last night of his visit going out with a few friends to Buffalo Wild Wings to take the "Blazing Fire" Challenge. (We all have to have a little fun!) Israel plans to drive back today and should be here by later this evening.

My brother Alan, who goes to school in Cleveland, visited us this weekend. The girls ate up his attention...it was nice to have him around.